Thursday, May 23, 2013

11 weeks into Topical Steroid Withdrawal (TSW)

Well... I know it's supposed to get worse before it gets better. It has definitely gotten worse. Keegan is such a trooper, or as these sufferers are called in my support group, he's a warrior. I can NOT imagine what it must feel like to itch all over, ALL the time, on every inch of your body. I'm noticing the "thinning of the skin" that steroid use is known to do. Keegan has scratched a couple spots on his ankle where you can see how thin his skin is.
I'm hopeful, but only because of support I am receiving through my ITSAN group (international topical steroid addiction network). I am talking with sufferers themselves, and also other moms with kids suffering. Some are still healing, others are healed. It seems that a lot of people have said that the first 4-6 months are the worst, then it should start to turn around. We are ALMOST in month 3. I would love to see his skin start turning around by the time next school year starts. The sun this summer should be very beneficial in healing as well.
I have to keep holding on to hope, that this WILL get better. Staying strong, avoiding steroid creams AGAINST doctor's orders. The doctors need to get more educated on this topic, do more research, and see success stories. The people that have already seen success, some of them have talked to their docs who prescribed the steroids, and the docs seemed to be uninterested, saying they didn't need/want to see any pictures of proof. I will talk to Keegan's doc about this... eventually. I would like him to heal first, then I'll have proof to show!
Here are some pics of 11 weeks into this hell.

Friday, May 10, 2013

We have a diagnosis! - Topical Steroid Addiction

A self-diagnosis but one nonetheless... Topical Steroid Addiction. Over the past 3 years, Keegan was prescribed steroid after steroid. Hydrocortisone, Triamcinolone, Desonide, as well as Protopic, which is a very potent drug with sickening side effects. Keegan is going through withdrawal... poor kid. Thanks to a blog I found (Loren & her son Kline), I have my answer.

And, here's the website for the topical steroid addiction network:

Poor kid may take over a year to heal from this, but the cure: time.
These are pictures 8 weeks into topical steroid withdrawal (from May 1, 2013).

We also are doing the GAPS diet, and are on stage 4. The goal is to heal his gut so it's not leaky anymore, and he can eventually tolerate more foods. Keegan is currently eating:
- bone broth
- boiled/roasted/sauteed veggies
- ground turkey, ground beef, lamb, salmon, lox
- avocado
- sunflower seed butter made into pancakes with squash and flax seeds
- juices made from apples, cucumber, zucchini, and spinach